Hasham Muhammad Jamil Trust (‘HMJ’ trust)
Registered Charity no: 1041708
Who are we?
The HMJ trust was founded in 1992 by the parents of a brave little boy called Hasham.
Hasham had a normal birth in a lovely hospital in Berkshire. Initially he fed well and was gaining weight well. At about 4 weeks of age his parents noticed that a scratch mark on his face was not healing as expected. He then went on to develop small blisters on his body that again failed to heal normally. Within a few months there was a realisation that something was not quite right and he was referred to Great Ormond Street Hospital (GOSH) in London. There, a young doctor from Australia noticed a disease pattern in Hasham that he had read about in other children of Punjabi Pakistani descent. This was called the LOC syndrome. The disease affected the larynx, nails, skin and the mucous membranes of children a few weeks after birth. The disease was relatively rare and doctors found it difficult to treat Hasham and other affected children. Treatment was mainly supportive. Over the next year Hasham had several operations on his larynx (throat) to ease his breathing and some on his eyes as his eyelids were beginning to stick together.
At the age of 18 months on October 2nd 1992 Hasham died peacefully in his sleep.
A few years later the parents of Hasham had twin girls – one of whom was also affected with LOC syndrome. Shazia died at the age of 9 months in 1998.
The current administrator of the trust is Dr. M Tanvir Jamil
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